Valerie Smith on 'ME/CFS is an organic disease'

In his Judgment, Mr Justice Otton said in answer to his first question (“Is there a condition, disease or illness called ME?”): “I do not share Dr Kendall’s scepticism on this disease. He has not persuaded me that the condition does not exist as a clinical entity other than in the minds of sufferers….I accept Dr Findley’s opinion as a neurologist: ‘There is no doubt that [CFS] (synonymous with Myalgic Encephalomyelitis) exists and is a genuine and common condition’ ”.

“Question 2: what are the principal or typical symptoms or characteristics? ….I accept Dr Weir’s finding from his work in this field that ‘a characteristic feature is an extreme variability of their severity together with a tendency to relapse if the patient over-exerts himself even on days when he feels marginally better’ ”.

“Question 3: what causes it? On the evidence before me and the present state of medical knowledge as opposed to theory and speculation, I am unable to answer this question with total certainty…I was impressed by Dr Weir’s research conclusions…I am prepared to find on the balance of probabilities that the chronic activation of the immune system is due to an agent provoking this activity probably by an as yet unidentified virus. I also accept his conclusion that the condition can be triggered by a viral infection or emotional stress or the trauma of an accident. I accept without reservation that he had had experience of other patients who have been diagnosed as suffering from CFS as a result of the trauma of an accident”. In this regard also I accept Dr Findley’s evidence which is based on similar clinical experience”.

“I accept the majority view of the experts that physical, psychological and infective stresses of all types can result in deterioration in the condition and impair recovery….Once it is established that CFS exists and that a relapse or recrudescence can be triggered by the trauma of an accident…it becomes a foreseeable consequence”.

The plaintiff duly won his case and was awarded £162,153.00 in compensation

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It is thus enshrined in UK law that ME/CFS is a physical, not psychiatric, disorder, although the mechanism by which a relapse may occur following trauma is via “nervous shock”.

Curiously, it proved to be extremely difficult to obtain all the transcripts. It was variously said that they had been inadvertently lost by the Transcript writers; that they had not been approved by the Court; and that they no longer existed, none of which was true.

Now why should that be? Case law is there to be quoted and relied upon

This has been a difficult post to write for reasons which will become apparent. I drafted it several days ago but have been debating since then whether or not to go ahead with it. I’ve now decided that, however difficult it is on a personal level, there is a much broader public interest in raising these issues...

...There is an article which is currently doing the rounds within the ME/CFS community. A few people have asked me for my view on it so I’m offering my observations here. The article appeared recently on an ME/CFS website and is entitled “ME/CFS is an organic disease“. So far, so good. At this point, I should make it clear that I have great respect for the author’s work in general but, in my opinion, there are some problems with this particular piece. However, I would not have written this post had I not specifically been asked for my view.

NB. Before finalising this post, I contacted the website’s manager a few days ago and expressed my specific concerns regarding the article. As a result of our communications, one minor alteration was made but otherwise it appears to retain its original text...

Most of the article deals with the series of judgments in the case of Page v Smith, from the mid-1990′s. In 1987, Mr Page and Mr Smith were involved in a minor road traffic accident which, it was agreed, was the fault of Mr Smith. Mr Page sustained no physical injury but did suffer a major relapse of his ME/CFS following the accident and claimed damages from Mr Smith. The case went all the way up to the House of Lords (which in 2009 became known as the Supreme Court). The House of Lords (HL) found in Mr Page’s favour, although not unanimously. The Law Lords remitted the matter back down to the Court of Appeal for a final determination. The Court of Appeal, having found against Mr Page the first time around, now found in his favour.

This was a protracted and complex case. The important points arising from it in the context of its significance to ME/CFS patients/advocates are these:-

- This is a Personal Injury (PI) case in which the main legal issues are causation (how the injury was caused), foreseeability and nervous shock.

- For nervous shock to succeed in a claim for damages, it must result “in some recognisable psychiatric illness” (see para 3 of Lord Keith’s judgment in the HL decision).

- Although ME/CFS occupied a large proportion of the discussion and certain findings were made, it was not specifically about ME/CFS.

- The comments made by the various judges about the nature of ME/CFS as a condition are therefore peripheral, not central, to the issues.

- Those comments are not legally binding, nor are they medically significant. They were made purely in the context of deciding this case on its particular facts.

- While this is an important PI case, it is from twenty years ago and has been much criticised. The correctness of the decisionwas doubted in a 2010 article in the Cambridge Law Journal [1]

It is therefore not correct to say “it is enshrined in English case law that ME/CFS is a physical, not psychiatric, disorder although the mechanism by which a relapse may occur following trauma is via nervous shock”. Medical evidence is also required showing a consequential ”recognisable psychiatric illness” which, in Mr Page’s case, then triggered a relapse of his ME/CFS symptoms. That is how he got his damages...

“Gagging orders”

These are more correctly known as confidentiality agreements and are not uncommon in cases which involve awards of damages. While they may not be desirable in terms of public transparency, they can serve a legitimate purpose. It does not appear that there was such an agreement in Mr Page’s case.

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The use of misleading information assists no one – and that includes us as ME/CFS patients/advocates. Using incorrect information to support our arguments only helps those who seek to discredit us as ill-informed or deluded conspiracy theorists. It is better that we focus our limited energies on cultivating more robust arguments using the wealth of more accurate information which is readily available.

We need all the tools at our disposal to achieve proper recognition, research and treatment for ME/CFS. Whilst we certainly need to know and understand the history of the illness, we also need to focus our efforts on collecting and utilising accurate and up-to-date information in our advocacy work.

We need to broaden the debate, both internally and externally. We need to learn how to read and analyse more critically; to engage respectfully in conversations which are founded on disagreement whilst (and this is crucial) developing our ability to disagree with each other more constructively. Conflict and confrontation are inevitable but the less we actively provoke it (or over-react to it), the better. If we cannot do this, then our detractors will continue to retain the upper hand...

I have been saying that the legal case is useful advocacy but hardly definitive. Its a legal matter, involving one case. If twenty other cases said the opposite, would they be right? Would it then be fair to say its twenty to one, it must be the first case is wrong? Legal cases are about points of law, not science. Its good advocacy to a point, but it doesn't validate ME as a disease. Other research does however. So I substantially agree with Valerie, though I also think that Hooper did us a great service by writing about the case findings.

Hooper has also documented most of that other research, at least up to 2009 anyway. Yet its the research in the recent years that is beginning to put the rivets in, one by one, to an iron case for ME as an organic disease. Its almost there. Of course "almost" is relative. Its still taking too long for everyone who is suffering.

I haven't studied all the details closely. Am I right in thinking that the 'nervous shock' and the 'recognisable psychiatric illness', that were discussed in the legal case, were separate to the ME, and that they were considered to have led to (or caused) a relapse in the ME. But that the ME itself was not described in terms of 'nervous shock' or a 'recognisable psychiatric illness', but was regularly described as a physical/medical disorder?

Valerie also says--I'm not excerpting it because people should go to the blog--that it doesn't seem like anybody's been working on the Wikipedia article.

However, on the Talk page, someone did exactly that a couple of weeks ago. They put a lot of work in, too, only to be smacked down by an editor who has been very careful to maintain the tone of the page, and for a very long time. Then "Lassesen" who I assume is Ken Lassesen, who I think is Ecoclimber? Well, "Lassesen" tried also, in the past few days. Again smacked down. There are about 20 pages in the Talk archives that people should read before they spend time on that article. There is a hierarchy that is not going to change merely because we deal with a disease for which the published literature exists in a paradigm that is, and I'll be kind about this, distorted. Lassesen has some spunk, but some of the editors on the CFS page are known to have crossed paths with a certain well-known "CFS Researcher." And even if they brought no bias to the debate, it is not difficult to forge an end product that supports a particular narrative; it's all about not considering research papers to be reliable sources, in favor of secondary reviews. This is not a platform on which we can have a fair hearing. After a brief, somewhat hostile skirmish, I believe the page has been locked.

1. Before her blog post, Miss Eliot Smith emailed the website owner requesting that he withdraw the article but she originally provided no reasons to substantiate her claim that its central premise is incorrect; such an unpersuasive approach would seem to be in contrast to her call for the need to develop “our ability to disagree with each other more constructively"

2. The original judgment of Mr Justice Otton commented on the nature/status of ME and unequivocally found that there is a condition, disease or illness called ME and referred to it as a medical disorder

3. The finding that there is a condition, disease or illness called ME and that it is a medical disorder does not apply only to the Page v Smith case

4. The judgment of Mr Justice Otton was ratified by no less a person than The Master of the Rolls, fully supported by Lord Justice Morrit and Lord Justice Auld. They found that the judgment of Mr Justice Otton was “unassailable”. That judgment was unanimously in favour of Mr Page and can be cited by future litigants

5. The Page v Smith case is part of the common law of England and Wales

6. Miss Eliot Smith asserts that the comments of their Lordships were not legally binding, nor were they medically significant; however she fails to cite any English case law that has superseded the judgment of The Master of The Rolls

7. An article in a law journal expressing a contrary opinion to their Lordships’ does not serve to undermine the status of the Page v Smith judgment, so it is surprising that a (self-admittedly non-practising) barrister attempts to give it equal weight to a judicial determination

8. Furthermore, Miss Eliot Smith says she has not read all the judgments before forming her opinion, whereas Professor Hooper’s article was based on full copies of all the approved judgments in Page v Smith

Until it has been tested in court, what Miss Eliot Smith states in a blog post remains her opinion only.

If the following quote weren't as long, I'd use it as my signature. Congratulatios to Valerie on a well written article!

The use of misleading information assists no one – and that includes us as ME/CFS patients/advocates. Using incorrect information to support our arguments only helps those who seek to discredit us as ill-informed or deluded conspiracy theorists. It is better that we focus our limited energies on cultivating more robust arguments using the wealth of more accurate information which is readily available

This is about the ruling on and interpretation of a legal claim made for Personal Injury and not about the nature or cause of ME/CFS. Discussions pertaining to that made in court have no bearing on the medical world.

And yet Hooper's team made much of this and less of the actual court case and this reply from Valerie equates with an independent review of the law by a British lawyer who also happens to have ME.

Personally I find it extremely useful to have an expert view such as this one.

The way I have read Valerie's review of the evidence and case notes is that in order for the original claim to have succeeded the claimant had to demonstrate the accident resulted in nervous shock - the legal term under which he was making a claim in the policy - and that this produced or equated with a recognised psychiatric illness.

But the decision to award damages doesn't mean ME/CFS is psychiatric - that is not what was being pursued - and any discussion about the nature or cause of ME/CFS that happened outside of this decision is irrelevant to that decision.

So they might have discussed the nature of ME/CFS. They might have argued it was of 'organic origin' (whatever that means) - but this chap won his claim because it was argued the accident resulted in nervous shock a psychiatric illness that he had presented primarily as being a relapse in his ME/CFS.

It could similarly have been argued in another case that this nervous shock resulted in a relapse of his Multiple Sclerosis.

- This is a Personal Injury (PI) case in which the main legal issues are causation (how the injury was caused), foreseeability and nervous shock.

- For nervous shock to succeed in a claim for damages, it must result “in some recognisable psychiatric illness” (see para 3 of Lord Keith’s judgment in the HL decision).

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I am more unclear about foreseeability - not sure what that means: perhaps Valeria can explain more tomorrow.

The conversations surrounding what does and what doesn't constitute ME/CFS are not central to the decision and are not therefore a part of 'English case law' in this instance which was what was being argued by Hooper and his team as a central tenet to this case:

- Although ME/CFS occupied a large proportion of the discussion and certain findings were made, it was not specifically about ME/CFS.

- The comments made by the various judges about the nature of ME/CFS as a condition are therefore peripheral, not central, to the issues.

- Those comments are not legally binding, nor are they medically significant. They were made purely in the context of deciding this case on its particular facts.

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If I were in a similar position and wanted to pursue a claim of nervous shock in respect of a Personal Injury Insurance - assuming such an option was open to me in a policy - presumably I would also have to demonstrate this nervous shock was a psychiatric illness - and if I was claiming a relapse of ME/CFS was the results of said accident - then doesn't it imply I was suffering from a psychiatric illness - but only to the extent that the shock was the trigger?

Car accident. Claim made of nervous shock resulting in relapse of ME/CFS. In order for claim to be successfully upheld I must demonstrate nervous equated to psychiatric illness - for the purposes of this claim. Not that ME/CFS is of an organic nature.

The decision here - and the legal argument - doesn't have a bearing on whether or not ME/CFS is caused by or indeed is a so-called 'organic illness'. The claimant was seeking a determination: can I claim damages under the clause for 'nervous shock' based on what happened to me as a result of this accident?

When Hooper (or whomsoever wrote that initial release) claimed the peripheral discussion was 'english case law' they were wrong. This case does not it seems substantiate the case for ME/CFS being of an organic nature at all.

Personally, I am grateful to Valerie for taking the time to do this and to reply with such sensitivity. Hopefully, she can let me know where I have erred in my likely dubious understanding. I would never have made a lawyer

Legal determinations do not have scientific merit. Its useful politically, and useful in general advocacy, and good to know about, but its not the same as a scientific conclusion. I see this as one of a large number of political arguments that we can and should use .... politicians and bureaucrats value legal argument. I also see it as a springboard for developing arguments about ethical violations by doctors in the UK.

If I were in a similar position and wanted to pursue a claim of nervous shock in respect of a Personal Injury Insurance - assuming such an option was open to me in a policy - presumably I would also have to demonstrate this nervous shock was a psychiatric illness - and if I was claiming a relapse of ME/CFS was the results of said accident - then doesn't it imply I was suffering from a psychiatric illness - but only to the extent that the shock was the trigger?

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I haven't studied the entire case but, from what I've read, it seems that the 'nervous shock' was eventually determined to be a psychiatric illness for the sake of the insurance claim, but that the nervous shock (i.e. the psychiatric illness) was considered separate from the ME. The nervous shock was determined to have caused an exacerbation of the ME, or to have 'triggered' the relapse. But the ME itself was not considered to be either a nervous disorder or a psychiatric illness.

Yeah more or less I think. But the essential point for the discussion is that whatever ME is or is not, was not relevant to the court verdict and neither did it become 'enshrined in English law' which was the point being made by Hooper and his team.

Yeah more or less I think. But the essential point for the discussion is that whatever ME is or is not, was not relevant to the court verdict and neither did it become 'enshrined in English law' which was the point being made by Hooper and his team.

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The nature of ME did have relevance to the case and the verdict. For example, the judge established that ME exists (i.e. it is a real and 'genuine' illness) and he accepted that, once established, it is provoked by over-exertion, and that it can be exacerbated by the shock of a traffic accident.

The nature of ME did have relevance to the case and the verdict. For example, the judge established that ME exists (i.e. it is a real and 'genuine' illness) and he accepted that, once established, it is provoked by over-exertion, and that it can be exacerbated by the shock of a traffic accident.

But I don't understand any of the legal discussions/arguments.

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No. Not to the verdict on ruling if nervous shock resulted in (essentially) the relapse of ME/CFS and if this resulting 'injury' could be constituted as a psychiatric illness. That was what the award of damages was made on - not whether ME is organic or not. I mean this subsequent discussion was nice to read - but not relevant to the case.

Based on my understanding - which may change when the sun rises and I have had some sleep

Edit:

The reason I wanted these threads kept separate was because Valerie is addressing the point in law - whereas Hooper has tried to wrap the entire proceedings in law.

What I mean is - the actual point of law refers to the central tenet of this case (accident = claim for nervous shock = law says that in order to win based on this claim you must prove nervous shock was a recognised psychiatric illness), whereas Hooper says that the 'peripheral' discussion is what is the law e.g. the discussion that did surround (essentially) the nature and cause of ME i.e. it's 'organic' basis.

But this latter point though relevant to the proceedings was not what determined the verdict and did not result in the claim 'ME is organic' being enshrined in English law just because it featured in court documents and was talked about by the judge.

The claimant won because the nervous shock was deemed to to have resulted in a recognized psychiatric illness.